Fighting for everything': service experiences of people severely affected by multiple sclerosis

• Published in: Multiple sclerosis Vol. 13; no. 5; pp. 660 - 667
• Main Authors: Edmonds, P., Vivat, B., Burman, R., Silber, E., Higginson, I.J.
• Format: Journal Article
• Language: English
• Published: London, England SAGE Publications 01-06-2007; Arnold; Sage Publications Ltd
• Subjects: Access to Information; Adolescent; Adult; Aged; Biological and medical sciences; Communication; Continuity of Patient Care; Degenerative and inherited degenerative diseases of the nervous system. Leukodystrophies. Prion diseases; Female; Health Services Accessibility; Humans; Immunomodulators; Male; Medical sciences; Middle Aged; Multiple Sclerosis, Chronic Progressive - psychology; Multiple Sclerosis, Chronic Progressive - therapy; Multiple Sclerosis, Relapsing-Remitting - psychology; Multiple Sclerosis, Relapsing-Remitting - therapy; Needs Assessment; Neurology; Palliative Care; Pharmacology. Drug treatments; Severity of Illness Index; Social Work; information; communication; continuity of care; palliative care; multiple sclerosis; Human; Immunopathology; Multiple sclerosis; Nervous system diseases; Immune deficiency; Care; Inflammatory disease; Infection; Experience; Viral disease; Central nervous system disease; Palliative care; Perception; Surgical approach; Degenerative disease; Adaptation
• ISSN: 1352-4585; 1477-0970
• DOI: 10.1177/1352458506071789

Background No previous research exists specifically exploring the needs of those people severely affected by multiple sclerosis (MS).
Methods Semi-structured interviews were conducted with people identified by the referring health or social care professional as being severely affected by their MS and informal carers, in order to explore their perceptions of their illness and care. The data were analysed for themes using the constant comparative approach.
Results The data relate to 32 people severely affected by MS, who identified several broad themes, relating to loss and change, and provision of services and care. In relation to service provision, people with MS (PwMS) and their carers identified two, interlinked themes - a lack of continuity and co-ordination of care, and a lack of information about services, aids and adaptations, welfare benefits and end-of-life issues. A further theme was identified, which underpinned and linked the two other themes, that of `fighting for everything' - a sense that people had to struggle for their needs to be met.
Conclusion There is a need to develop models of care in order to better meet patients and carers needs for information, co-ordination, and to reduce the feeling of struggling to receive services. Multiple Sclerosis 2007; 13: 660-667. http://msj.sagepub.com